WEBVTT - Case #02: Athena 0:00:04.720 --> 0:00:09.520 It was watching my body start to deform by itself, 0:00:09.560 --> 0:00:12.800 like it was doing it to itself, and I couldn't 0:00:12.800 --> 0:00:16.560 do anything to stop it. The most difficult part is 0:00:17.040 --> 0:00:21.200 the pain, the pain and more pain. We're not inside 0:00:21.200 --> 0:00:24.119 their body, so we don't know exactly what they're feeling 0:00:24.160 --> 0:00:27.000 and what they're going through. It takes a lot of courage. 0:00:27.560 --> 0:00:29.880 You don't know if it's going to spread. And so 0:00:30.680 --> 0:00:44.000 I was like, this is absolute fear. How terrifying would 0:00:44.000 --> 0:00:47.320 it be to fight an unknown enemy, one you didn't 0:00:47.360 --> 0:00:51.559 recognize and didn't see coming. What if that enemy was 0:00:51.640 --> 0:00:56.200 coming from within a disease that even doctors couldn't identify. 0:00:57.480 --> 0:01:01.240 Nearly half of all Americans so he from some chronic 0:01:01.320 --> 0:01:06.959 illness and many struggle for an accurate diagnosis. These are 0:01:07.000 --> 0:01:14.120 their stories. I'm Lauren Bright, the checko, and this is symptomatic. 0:01:29.800 --> 0:01:35.119 Athena Garibalini instantly hits you with her infectious energy and enthusiasm. 0:01:35.120 --> 0:01:38.720 She has such verbs for things she's passionate about, including 0:01:38.760 --> 0:01:42.080 her little Bassett hound Homer, a name that combines a 0:01:42.160 --> 0:01:46.360 reference to the Simpsons with her Greek ancestry. He's not 0:01:47.560 --> 0:01:49.160 I wanted a dog that would like lay at my 0:01:49.200 --> 0:01:51.720 feet and snore and just kind of be this cute 0:01:51.720 --> 0:01:55.520 little companion. And he's he's just so funny. He's a clown. 0:01:55.600 --> 0:01:59.120 He keeps me laughing. Athena's warmth is apparent from the 0:01:59.120 --> 0:02:02.840 first time you talked her. Her older sister, Elizabeth, remembers 0:02:02.840 --> 0:02:05.920 her unique ability to connect with others from a very 0:02:06.000 --> 0:02:09.359 young age. She had an interesting personality as a young kid. 0:02:09.520 --> 0:02:12.560 She loved to be around older people. You know, she 0:02:12.680 --> 0:02:17.480 was just outgoing and kind of maybe you could say, 0:02:17.560 --> 0:02:20.720 kind of aloof, you know, but just in a fun way. 0:02:20.760 --> 0:02:24.160 But you wouldn't think to consider the insecurity Athena had 0:02:24.200 --> 0:02:27.560 to face throughout her life, as a string of mysterious 0:02:27.600 --> 0:02:31.960 and painful symptoms consumed so much of her freedom. So 0:02:32.200 --> 0:02:38.640 right around puberty, like thirteen fourteen, I started noticing these 0:02:38.680 --> 0:02:42.760 tiny little pimples appear um in between my thighs, my 0:02:42.800 --> 0:02:46.160 indoor line. I had a couple in my armpits. They 0:02:46.240 --> 0:02:51.440 weren't anything like other than you know, you sweat there, 0:02:51.760 --> 0:02:56.840 you get pimples, right, it's chafing, its friction. So for 0:02:57.000 --> 0:03:00.280 several years this would happen, and sometimes they be a 0:03:00.280 --> 0:03:03.160 little bit bigger than normal, but they weren't anything that 0:03:03.960 --> 0:03:09.120 raised an alarm or caused me to think something is wrong. 0:03:09.480 --> 0:03:13.280 And it's puberty, so your body is constantly morphing and 0:03:13.360 --> 0:03:17.520 changing and poking out in different places. Yeah, these are 0:03:17.600 --> 0:03:21.520 just pimples that are there. They come and go. It 0:03:21.639 --> 0:03:25.520 wasn't anything that made me think that this could be 0:03:26.600 --> 0:03:32.600 long term. But the location of the pimples in the 0:03:32.720 --> 0:03:35.680 armpit and along the groin, or the first sign that 0:03:35.840 --> 0:03:40.320 some unique pattern of irritation maybe at play here. Even 0:03:40.360 --> 0:03:44.440 if Athena wasn't initially able to recognize the unusual nature 0:03:44.640 --> 0:03:49.880 of her body's behavior, when was the first time that 0:03:50.840 --> 0:03:56.960 you realize this wasn't just normal puberty bumps? So at 0:03:57.360 --> 0:04:00.840 one one day, I was having this kind of growing 0:04:00.880 --> 0:04:06.600 pain um in between my cheeks, and eventually I couldn't 0:04:06.600 --> 0:04:09.440 sit down, and so I had to go to a 0:04:09.480 --> 0:04:14.040 doctor because it just wasn't going away. And he told 0:04:14.040 --> 0:04:17.360 me that what I had was a perianal abscess. He 0:04:17.440 --> 0:04:19.599 told me that I would have to go under anesthesia 0:04:19.800 --> 0:04:24.120 and have an incision and drainage for it, and um, 0:04:24.160 --> 0:04:27.080 I had this surgery and I was still kind of 0:04:27.120 --> 0:04:29.240 discovering my body. You know, at twenty one, you're not. 0:04:29.760 --> 0:04:31.840 You don't really have a whole lot of confidence in 0:04:32.600 --> 0:04:35.680 and maturity yet in that sense. And so the surgery 0:04:35.760 --> 0:04:39.919 itself was odd for me, right because I woke up 0:04:40.000 --> 0:04:43.840 upside down and I had netted shorts on that I 0:04:43.880 --> 0:04:47.440 didn't have before um. And so you know, just to 0:04:47.520 --> 0:04:50.240 think that, like, you know, you're going under anesthesia and 0:04:50.360 --> 0:04:52.600 people that you don't know are operating on a body 0:04:52.640 --> 0:04:58.400 part of yours. It's sensitive, uncomfortable both physically and mentally. 0:04:58.680 --> 0:05:01.760 Athena was desperate to do whatever she needed to in 0:05:01.880 --> 0:05:05.039 order to prevent this from ever happening again. I asked 0:05:05.040 --> 0:05:08.279 the doctor, so you know, what is this like? What 0:05:08.400 --> 0:05:11.000 causes this to happen? How can I prevent this from 0:05:11.040 --> 0:05:13.240 happening again? Because I really didn't want to go through 0:05:13.279 --> 0:05:16.000 it again. And he looked at me straight in the 0:05:16.040 --> 0:05:20.159 eyes and said, Perry, anal abscesses are caused by poor hygiene, 0:05:21.000 --> 0:05:24.239 and if you want to stop them from happening again, 0:05:24.320 --> 0:05:27.000 you need to take better care of yourself. He tells me, 0:05:27.000 --> 0:05:29.520 I need to shower twice a day, and he tells 0:05:29.560 --> 0:05:32.560 me that I need to stop scratching myself. And I 0:05:32.600 --> 0:05:35.560 wasn't scratching and I gotta tell you again. I was 0:05:35.600 --> 0:05:38.400 twenty one. Things were a little bit different back then, 0:05:38.600 --> 0:05:42.359 and so I was just naive in my thinking and 0:05:42.520 --> 0:05:46.120 my youth. And he was the doctor, right, so if 0:05:46.160 --> 0:05:48.080 he said I had a hygiene problem, I had a 0:05:48.160 --> 0:05:53.200 hygiene problem, I wholeheartedly believed him. But he didn't elaborate. 0:05:53.720 --> 0:05:57.840 So basically, he's making you feel dirty, Yeah, very much. 0:05:57.839 --> 0:06:02.440 So I went home and I was mortified. Like I 0:06:02.480 --> 0:06:06.760 was thinking about the staff in the outpatient facility that 0:06:06.800 --> 0:06:08.920 I had my surgery in, and all the people that 0:06:08.960 --> 0:06:12.960 I came in contact with, like them thinking I was 0:06:13.000 --> 0:06:16.800 there because I was dirty. And then I thought, oh my, Like, 0:06:17.279 --> 0:06:19.200 I can't talk about this too much with other people. 0:06:19.440 --> 0:06:21.120 Maybe you talk to your mom about it, maybe you 0:06:21.160 --> 0:06:23.000 talk to your sister or a couple of friends about it, 0:06:23.040 --> 0:06:26.360 but like, in general, you don't want to mention pain 0:06:26.520 --> 0:06:31.400 in your groin and your breasts and your armpits. It's 0:06:31.440 --> 0:06:34.279 hard enough being your own advocate as a young adult, 0:06:34.839 --> 0:06:38.040 let alone, while trying to hide something so sensitive. Feeling 0:06:38.080 --> 0:06:41.960 overcome with embarrassment and shame, Athena is desperate for relief. 0:06:43.640 --> 0:06:46.839 Over the next couple of years, I started hyper examining 0:06:47.080 --> 0:06:51.640 my hygiene routine, thinking like, maybe it's the soap I'm using, right, 0:06:52.040 --> 0:06:55.400 so let me change the soap. Maybe I'm not washing 0:06:55.400 --> 0:06:57.520 good enough. So now in these two showers that I'm 0:06:57.560 --> 0:07:00.120 taking twice a day, i am scrubbing extra hard. I'm 0:07:00.160 --> 0:07:02.960 getting all those sweaty areas, Like maybe you need to 0:07:03.000 --> 0:07:07.279 change out my wash. Class More, Elizabeth recalls her sister 0:07:07.360 --> 0:07:11.920 working diligently to change her habits. She's a proactive person, 0:07:12.040 --> 0:07:15.440 so she's always looking for a solution instead of, you know, 0:07:15.520 --> 0:07:18.640 sitting with the problem. She's always looking for a way 0:07:18.680 --> 0:07:22.240 to make something better, fix it. And you kind of 0:07:22.240 --> 0:07:25.480 start going through this process of it's something I'm doing, 0:07:25.680 --> 0:07:28.880 let me test it. I started going to write aids 0:07:28.920 --> 0:07:31.840 a lot, and I would go into their acneile and 0:07:31.880 --> 0:07:36.480 their face wash section, and UM systematically was trying product 0:07:36.520 --> 0:07:39.880 after product after product after product, going maybe this is 0:07:39.920 --> 0:07:44.320 just like acne on steroids, and maybe you'll have an 0:07:44.360 --> 0:07:46.720 area of common. You think, Okay, I've got this, Like 0:07:46.840 --> 0:07:49.600 they stopped coming. I figured out what it is, and 0:07:49.600 --> 0:07:52.760 then you'll get one and then you're right back to 0:07:52.760 --> 0:07:57.560 the drawing board of what is this? The flare ups 0:07:57.560 --> 0:08:00.440 continued no matter what she does to treat them, and 0:08:00.520 --> 0:08:04.000 the abscesses that were once pimples are now starting to 0:08:04.120 --> 0:08:09.480 permanently change her body, to permanently disfigure her. It really, 0:08:09.560 --> 0:08:13.520 for whatever reason, probably a good ten years focused heavily 0:08:13.640 --> 0:08:16.320 on my armpits. Once it started in one armpit, it 0:08:16.360 --> 0:08:18.520 was only a matter of time before it started in 0:08:18.560 --> 0:08:22.120 the other. At one point I had a string of 0:08:22.560 --> 0:08:26.720 five very large black heads right that we're right next 0:08:26.760 --> 0:08:29.800 to each other, And within about a month it had 0:08:29.840 --> 0:08:35.120 formed into this weird looking almost like not of skin 0:08:35.280 --> 0:08:38.280 and tissue, and it was red and it was painful, 0:08:38.400 --> 0:08:41.520 and then it would drain. My arm pits went from 0:08:41.840 --> 0:08:45.160 normal looking to I don't even have the words to 0:08:45.240 --> 0:08:49.000 describe it. Um it was scar tissue. It was all 0:08:49.040 --> 0:08:52.680 of these little holes and ridges and lumps like it 0:08:52.840 --> 0:08:56.760 was different because the skin was starting to get deformed. 0:08:58.440 --> 0:09:01.920 I cannot imagine. And the horror that you must have 0:09:01.960 --> 0:09:04.959 felt like every single morning going into the bathroom, closing 0:09:04.960 --> 0:09:09.040 the door and then checking to see if it's gotten better, 0:09:09.520 --> 0:09:14.400 and it's just getting worse. It was watching my body 0:09:14.480 --> 0:09:18.520 be start to deform like by itself, like it was 0:09:18.559 --> 0:09:21.800 doing it to itself, and I couldn't do anything to 0:09:21.800 --> 0:09:27.040 stop it. A decade goes by and Athena still doesn't 0:09:27.080 --> 0:09:32.000 know or understand what's happening to her body. No matter 0:09:32.040 --> 0:09:37.040 why changed in my life, it was just becoming its own, 0:09:37.960 --> 0:09:43.000 its own thing on my body. It was horrifying. So 0:09:43.320 --> 0:09:48.880 you are trying to not only hide your symptoms, but 0:09:49.280 --> 0:09:55.480 to hide your pain as a direct result of what 0:09:55.600 --> 0:10:00.040 you're experiencing. Yes, I was a manager and I I 0:10:00.200 --> 0:10:04.720 lead a staff, and I would come in having difficulty walking, 0:10:05.720 --> 0:10:07.720 but I didn't want to admit to my staff that 0:10:07.800 --> 0:10:10.080 it was because I had an abscess in my growing 0:10:12.559 --> 0:10:15.120 and I'm trying to make sure that my coworkers can't 0:10:15.120 --> 0:10:17.640 see that. You know, I have drainage on my clothing. 0:10:18.360 --> 0:10:22.400 I'm terrified to sit down in places because if I do, 0:10:22.600 --> 0:10:25.040 like am I going to stay something? Am I going 0:10:25.080 --> 0:10:27.400 to leave a wet spot when I get up? And 0:10:27.440 --> 0:10:30.120 then I'm terrified, like advantages. I wasn't really good then 0:10:30.120 --> 0:10:34.000 at my bandage game, and so like our bandage is 0:10:34.040 --> 0:10:36.400 going to fall out, you know, like they had to 0:10:36.400 --> 0:10:38.560 see this when I would do bandage changes in the 0:10:38.559 --> 0:10:42.679 bathroom at work, like so meticulous about wrapping them up 0:10:42.720 --> 0:10:46.080 so that nobody could even tell what it was so 0:10:46.160 --> 0:10:49.679 much of the focus became not only controlling this disease 0:10:49.679 --> 0:10:53.120 but hiding it. It felt like a full time job. 0:10:53.600 --> 0:10:55.560 And then I'm going home and looking in the mirror 0:10:55.559 --> 0:10:59.880 and crying because no matter what I do, I can't 0:11:00.440 --> 0:11:06.960 stop this from happening. Though keeping her growing concerns very private, 0:11:07.360 --> 0:11:11.720 the physical changes Athena was experiencing were becoming anything but hidden. 0:11:12.320 --> 0:11:16.120 Looking back, Elizabeth recalls her sister's boundaries with her own body. 0:11:17.280 --> 0:11:19.800 There were many years where, you know, we would go 0:11:19.840 --> 0:11:22.160 to the beach and she didn't want to go, or 0:11:22.200 --> 0:11:24.080 you know, just wearing a tank top would be a 0:11:24.120 --> 0:11:29.800 feat because of the scarring and the wounds. How is 0:11:29.840 --> 0:11:35.680 this impacting your confidence socially in terms of relationships, in 0:11:35.800 --> 0:11:40.400 terms of of leaving the house. Um, I wasn't wearing 0:11:40.400 --> 0:11:43.320 tank tops. Um I went probably a decade without wearing 0:11:43.320 --> 0:11:47.000 a bathing suit. I got married, but I didn't talk 0:11:47.040 --> 0:11:52.120 about it with anyone. Despite her silent hardship, Athena meets 0:11:52.160 --> 0:11:55.800 Carlos and feels like she's connected with someone who understands 0:11:55.840 --> 0:12:00.319 and accepts her vulnerability on new levels. But still her 0:12:00.320 --> 0:12:04.240 divide with being open with others deepens. She keeps the 0:12:04.280 --> 0:12:07.000 severity of the pain from her close friends and family. 0:12:07.800 --> 0:12:10.920 Looking back, her sister regrets missing the chance to share 0:12:10.960 --> 0:12:14.360 comfort and understanding with Athena. I wish I would have known, 0:12:14.480 --> 0:12:17.480 but I didn't um And you know, you don't have 0:12:17.600 --> 0:12:21.760 to live in shame and in fear. Athena's symptoms were 0:12:21.840 --> 0:12:25.680 as painful as they were insidious. For years to follow, 0:12:25.760 --> 0:12:29.840 she managed the constant irritation and persistence of her painful 0:12:29.920 --> 0:12:34.840 lumps and lesions, But suddenly her focus changes. When Carlos 0:12:34.920 --> 0:12:38.920 becomes very ill, Athena is about to face a new 0:12:39.040 --> 0:12:42.480 fear that will desperately renew her drive to finally get 0:12:42.480 --> 0:12:46.080 a proper diagnosis and treatment. This is now when I 0:12:46.120 --> 0:12:48.199 have to go to a doctor because I have a 0:12:48.280 --> 0:12:52.280 husband at home whose life is depending on me taking 0:12:52.320 --> 0:12:54.320 care of him, and I don't want to give him 0:12:54.320 --> 0:13:04.240 anything infectious. We'll be right back with Symptomatic, a Medical 0:13:04.320 --> 0:13:11.360 Mystery Podcast. Now back to Symptomatic, a Medical Mystery Podcast. 0:13:14.640 --> 0:13:18.559 Athena Jarbellini spent over a decade learning to cope with 0:13:18.720 --> 0:13:22.440 and justify the constant pain and inflammation that she was 0:13:22.559 --> 0:13:26.360 led to believe was caused by poor personal hygiene. Despite 0:13:26.400 --> 0:13:30.400 a tireless hunt for improvement and relief. But as her 0:13:30.480 --> 0:13:33.800 husband started to face a cluster of health issues, her 0:13:33.840 --> 0:13:37.240 concerns for her own health as his wife, advocate and 0:13:37.280 --> 0:13:41.360 caregiver were coming to a head. Carlos had gotten very sick, 0:13:41.520 --> 0:13:46.880 very rapidly, and required a severe appendectomy. He was in 0:13:46.960 --> 0:13:48.920 a lot of pain and stubborn, so I didn't get 0:13:48.960 --> 0:13:52.240 to the doctor right away, but for about a year 0:13:52.800 --> 0:13:55.440 all of the consequences. He was a diabetic and so 0:13:56.160 --> 0:13:58.920 it got reinfected a couple of months later. You know, 0:13:58.960 --> 0:14:00.800 they were pumping them with so many antibiotics that it 0:14:00.880 --> 0:14:04.280 sent him into diabetic rhytnopathy, and so he had eye 0:14:04.320 --> 0:14:08.320 surgeries and like it was just a whole series of 0:14:08.760 --> 0:14:11.559 medical events. At that time, I was a hospital wife 0:14:11.920 --> 0:14:15.400 for the most part. Now her spouse's main support system, 0:14:15.760 --> 0:14:19.480 Athena's health issues quickly took a back seat. It wasn't 0:14:19.560 --> 0:14:22.280 until she was concerned about putting her husband at further 0:14:22.400 --> 0:14:25.360 risk that she decided to face the concern she was 0:14:25.480 --> 0:14:28.920 letting loom in the background of her everyday life. In 0:14:28.920 --> 0:14:32.120 our apartment, I kept a near sterile environment so that 0:14:32.160 --> 0:14:34.960 he wouldn't get an infection again. But I remember one 0:14:35.000 --> 0:14:38.320 time in one of the hospital elevators, I saw this 0:14:38.480 --> 0:14:42.760 poster for MERSA and I thought, it kind of looks 0:14:43.120 --> 0:14:46.320 a little like what I have. For those not familiar, 0:14:46.800 --> 0:14:49.760 MERSA is a cause of staff infection that's difficult to 0:14:49.760 --> 0:14:53.280 treat due to resistance to some antibiotics. So I go 0:14:53.320 --> 0:14:55.520 home and I look it up and I'm like, kind 0:14:55.520 --> 0:14:59.720 of does but not really, but maybe. So this is 0:14:59.760 --> 0:15:01.360 now when I have to go to a doctor, because 0:15:01.400 --> 0:15:04.320 if I have something infectious, I have a husband at 0:15:04.360 --> 0:15:08.800 home whose life is depending on me taking care of him, 0:15:08.840 --> 0:15:11.840 and I don't want to give him anything infectious or 0:15:12.360 --> 0:15:17.400 you know, cause him to get even more sick. With 0:15:17.440 --> 0:15:21.600 a susceptible husband relying on her care, Athena decided she 0:15:21.640 --> 0:15:25.160 could no longer risk letting her so called lack of 0:15:25.240 --> 0:15:28.720 hygiene and endanger his life any further. So Athena went 0:15:28.800 --> 0:15:31.520 back to the doctor for the first time in seven years. 0:15:32.800 --> 0:15:34.920 So the first doctor visit that I went to, the 0:15:34.960 --> 0:15:37.520 doctor takes a look at it and says, it's not mersa, 0:15:38.200 --> 0:15:43.720 it's mercin, which is another some sort of infection or whatnot. 0:15:44.120 --> 0:15:46.200 But he gives me a prescription and he says, if 0:15:46.200 --> 0:15:50.000 this doesn't clear up in five days, come back. So 0:15:50.120 --> 0:15:52.080 this was an urgent care that I went to write, 0:15:52.080 --> 0:15:53.760 and one that had a lot of hours and a 0:15:53.800 --> 0:15:58.840 lot of different doctors, was really busy, large practice, And 0:15:58.920 --> 0:16:02.080 so I went back in five days because nothing happened 0:16:02.120 --> 0:16:05.520 with it, right, no noticeable difference, no noticeable change. It 0:16:05.640 --> 0:16:09.240 was exactly the same as it was before. But this 0:16:09.280 --> 0:16:12.480 time I got a brand new doctor. And I always 0:16:12.520 --> 0:16:14.320 like to joke and like, give the duke, how is 0:16:14.360 --> 0:16:18.320 a reference? He looked so young, he was a baby, 0:16:18.480 --> 0:16:21.800 and I had just probably graduated medical school and you know, 0:16:21.840 --> 0:16:24.680 I just got a more up to date education. And 0:16:24.720 --> 0:16:27.040 so he takes a look at my armpit and he says, 0:16:27.120 --> 0:16:36.000 that's not mercia, that's hydrodenius superitiva. And I looked at 0:16:36.040 --> 0:16:40.560 him and said, hydro what what can you repeat that? 0:16:40.680 --> 0:16:44.160 What did you just say this was? And he gives 0:16:44.160 --> 0:16:47.040 me this hand out and he says, this is what 0:16:47.080 --> 0:16:49.160 it is, you know a little description of it, and 0:16:49.240 --> 0:16:51.880 you need to go see a dramatologist and sends me 0:16:51.920 --> 0:16:54.840 on my way. I went home and I googled. Some 0:16:54.920 --> 0:16:56.880 of the images looked exactly like what I had, and 0:16:56.880 --> 0:16:59.840 I knew, yes, this is it. This is definitely what 0:16:59.880 --> 0:17:03.840 I have. But I gotta tell you, ten twelve years ago, 0:17:04.240 --> 0:17:08.840 Google was not kind to this disease at all. I 0:17:08.880 --> 0:17:15.439 was horrified at what I saw. Hydrogenitis superativa or HS 0:17:15.920 --> 0:17:19.560 is a chronic skin condition. It's an auto inflammatory disease, 0:17:19.920 --> 0:17:24.080 meaning the immune system attacks the skin cells, causing inflammation 0:17:24.280 --> 0:17:28.280 in those areas. Dr Kirby, an associate professor at Penn 0:17:28.280 --> 0:17:31.800 State Health who was treated and advocated for HS patients 0:17:31.800 --> 0:17:37.000 her entire career, helps explain HS and its symptoms. So 0:17:37.600 --> 0:17:42.200 HS or HydroD Nitis superativa, which is quite a mouthful, 0:17:42.280 --> 0:17:46.359 which is why we say HS first and foremost, is 0:17:46.680 --> 0:17:52.680 a inflammatory condition. And I really emphasized that because it 0:17:52.760 --> 0:17:57.120 looks for all the world like an infection. Because let's 0:17:57.160 --> 0:18:00.600 say we got an injury. Our immune system reacts to 0:18:00.680 --> 0:18:03.639 that and wants to wall it off and protect the 0:18:03.680 --> 0:18:07.680 rest of us, So it makes it red and puffy, 0:18:07.800 --> 0:18:12.520 and the chemicals that are released make it painful or itchy. Well, 0:18:13.359 --> 0:18:18.080 the same immune system that reacts to foreign objects or 0:18:18.119 --> 0:18:22.080 bacteria that way is now just overactive and it seems 0:18:22.119 --> 0:18:25.800 to focus in on the hair follicle for reasons we 0:18:25.800 --> 0:18:30.679 don't totally understand yet causes all of those same reactions, 0:18:31.440 --> 0:18:35.000 but there's no infection. It's red, it's puffy, it's swollen. 0:18:35.080 --> 0:18:38.480 Sometimes it's so inflamed in our immune system is so 0:18:38.640 --> 0:18:42.920 powerful it actually causes the skin to break open, so 0:18:43.119 --> 0:18:48.080 ulcers form scarring happens. And it's usually in folds of 0:18:48.080 --> 0:18:52.520 the body, so under the arm, under the breast, in 0:18:52.560 --> 0:18:55.960 the fold of the leg, on the genital area, the buttocks. 0:18:57.080 --> 0:19:00.159 HS was once seen as a rare disease but has 0:19:00.200 --> 0:19:03.000 now been found to be much more common today. Between 0:19:03.320 --> 0:19:06.919 one to four percent of Americans suffer with HS, and 0:19:06.960 --> 0:19:10.399 despite affecting almost thirteen million people in the U. S Alone, 0:19:11.000 --> 0:19:15.400 HS is still commonly misdiagnosed and missed by doctors. Dr 0:19:15.480 --> 0:19:20.159 Kirby explains why the common symptoms often go overlooked. You know, 0:19:20.200 --> 0:19:24.480 it's almost acne, but in the wrong areas for acne, 0:19:25.600 --> 0:19:29.240 especially in the US, because we shave as women very 0:19:29.320 --> 0:19:33.240 frequently under the arms and in the groin. Again, we 0:19:33.520 --> 0:19:37.000 presume it must be because of something we did. Though 0:19:37.040 --> 0:19:40.240 there's a lot of new research and treatments rapidly emerging, 0:19:40.800 --> 0:19:45.439 HS is still very poorly understood, especially within minority communities. 0:19:45.800 --> 0:19:48.560 For example, HS is found to be more frequent and 0:19:48.600 --> 0:19:52.800 severe in black communities than in other racial and ethnic groups, 0:19:53.160 --> 0:19:58.520 so the emphasis on widespread research, education, and advocacy is key. 0:19:58.840 --> 0:20:01.960 Dr Kirby helps explain in what this disproportionate effect of 0:20:02.200 --> 0:20:07.280 HS on minority community says about understanding the condition. Why 0:20:07.320 --> 0:20:12.840 are some populations of people black or Hispanic female versus male. 0:20:13.240 --> 0:20:16.280 We don't quite understand why that's the case, but whenever 0:20:16.359 --> 0:20:19.400 we see that kind of a difference, it means there's 0:20:19.400 --> 0:20:23.640 something to look for. UH. People with Down syndrome are 0:20:23.680 --> 0:20:27.359 also more likely to have HS, so trying to understand 0:20:27.440 --> 0:20:31.680 why those things are associated helps us understand why it 0:20:31.840 --> 0:20:35.080 just is maybe happening in everyone and helps us to 0:20:35.160 --> 0:20:37.760 then treat it. I just have to say right out 0:20:37.760 --> 0:20:39.960 of the bat, so I don't forget. I have so 0:20:40.160 --> 0:20:43.920 much hope, so so much hope, And I don't think 0:20:44.000 --> 0:20:47.840 that that is always a message that people here when 0:20:48.359 --> 0:20:52.040 they search HS or here about HS. But there is 0:20:52.080 --> 0:20:59.160 so much coming y'all. The growth in therapies is faster 0:20:59.400 --> 0:21:07.560 than anything I've seen. Now, given the opportunity to tackle 0:21:07.760 --> 0:21:11.040 exactly what was at play for so many years, ATHENA 0:21:11.200 --> 0:21:16.120 is determined to connect her symptoms to real solutions, finally 0:21:16.240 --> 0:21:19.360 finding a specialist to help treat the pain and include 0:21:19.359 --> 0:21:22.120 her in a clinical trial at the Penn State Hospital. 0:21:22.440 --> 0:21:27.400 Athena was slowly coming to understand her options. Carlos continued 0:21:27.440 --> 0:21:30.440 to struggle with his own health issues, but he remained 0:21:30.480 --> 0:21:34.639 optimistic about Athena's journey learning to live with her HS. 0:21:35.440 --> 0:21:37.800 I had gotten an email from Penn State saying that 0:21:37.840 --> 0:21:40.520 they were having a support group for HS, and I 0:21:40.560 --> 0:21:42.399 was like, I don't really know if I want to 0:21:42.400 --> 0:21:44.200 go to this, you know, talk to my husband about it. 0:21:44.200 --> 0:21:45.760 I didn't go to like the first two meetings because 0:21:45.760 --> 0:21:50.879 I was like, I don't know. I just a little afraid. Um. 0:21:50.960 --> 0:21:54.000 And then he wasn't nudging me to go, and he 0:21:54.119 --> 0:21:55.720 was like, just go to one. If you don't like it. 0:21:55.720 --> 0:21:57.200 You don't never have to go back, but just go 0:21:57.400 --> 0:22:00.200 to one meeting and see what it's about. And I went, 0:22:00.600 --> 0:22:03.280 And I have not stopped to the point now where 0:22:03.320 --> 0:22:06.199 I am the president of the organization that hosts these meetings. 0:22:07.440 --> 0:22:11.199 What what did that open up for you? Emotionally? It 0:22:11.280 --> 0:22:14.880 took the isolation factor away, and it helped me start 0:22:14.960 --> 0:22:19.200 to feel more normal, right so hearing other patients tell 0:22:19.240 --> 0:22:22.160 their stories and they weren't exactly the same as mine, 0:22:22.160 --> 0:22:24.680 but there were similarities, and there were a lot of similarities. 0:22:25.520 --> 0:22:29.359 Hearing that made me feel more human. It made me 0:22:29.400 --> 0:22:33.080 feel less bad about myself. You know, my floor activity 0:22:33.119 --> 0:22:36.199 always tended to pick up right before my cycle, my 0:22:36.200 --> 0:22:39.639 menstrual cycle, and so hearing other girls say that as well, 0:22:40.280 --> 0:22:44.320 like just starting to understand that a lot of the 0:22:44.359 --> 0:22:46.600 disease mechanisms that we're going on with my body were 0:22:46.600 --> 0:22:50.200 happening in other people. And then hearing, you know, learning 0:22:50.200 --> 0:22:53.880 about how they cope with it mentally and physically. Through 0:22:53.960 --> 0:22:57.880 Hope for HS, an organization that supports patients and families 0:22:57.880 --> 0:23:01.840 who are affected by HS Diena found ammunition to fight 0:23:01.920 --> 0:23:06.280 her symptoms. For so long, the widespread lumps, pain and 0:23:06.320 --> 0:23:10.919 scarring only ignited very real emotional pain and stigma, But 0:23:11.200 --> 0:23:14.119 through her work with the organization and her new friends, 0:23:14.400 --> 0:23:17.520 Athena was building a larger network of support for herself 0:23:17.800 --> 0:23:22.000 and connecting the community with rapidly growing solutions, including expert 0:23:22.080 --> 0:23:26.080 researchers like Dr Kirby and I remember the first real 0:23:26.760 --> 0:23:29.840 impactful experience I had with her. She asked me to 0:23:29.840 --> 0:23:32.840 come in and do an interview with her, and it 0:23:32.880 --> 0:23:34.640 was super early in the morning. We were the only 0:23:34.680 --> 0:23:38.440 ones in her office, and she asked me a question 0:23:38.760 --> 0:23:44.640 right about how this disease affected, um my, my intimate life, 0:23:45.200 --> 0:23:49.320 and I just paused, right, and I'm like trying to 0:23:49.359 --> 0:23:53.959 hold it together because I have never admitted this to myself, 0:23:54.160 --> 0:23:57.639 to my husband. I wouldn't allow my thought processes to 0:23:57.720 --> 0:24:01.920 go there, you know. And I'm frozen. And she very 0:24:02.040 --> 0:24:05.359 kindly takes a box of tissues and slides it across 0:24:05.359 --> 0:24:11.399 the desk and the tears just opened. Um that was 0:24:11.400 --> 0:24:13.760 when I knew I was in really good hands with her. 0:24:14.600 --> 0:24:18.240 As Athena discovers a growing community of people who understand 0:24:18.280 --> 0:24:22.640 her experience and an arsenal of answers to reprioritize comfort 0:24:22.720 --> 0:24:25.239 in her day to day life, Athena is faced with 0:24:25.280 --> 0:24:30.600 an unimaginable horror in her personal life. My husband passed 0:24:30.680 --> 0:24:34.679 in May of two thousand and twenty. UM. He was 0:24:34.960 --> 0:24:38.560 a diabetic and he went into kidney failure and so 0:24:38.680 --> 0:24:41.800 he actually survived cardiac arrest twice. They were able to 0:24:41.840 --> 0:24:44.119 get him back, but after a couple of days in 0:24:44.160 --> 0:24:47.800 the hospital, we had we had to take him off 0:24:47.800 --> 0:24:52.119 of life support. I'm so sorry. Yeah, he was a 0:24:52.359 --> 0:24:56.600 forty We were married two days shy of eleven years 0:24:57.440 --> 0:24:59.919 when he passed, and we were together fifteen years old too. 0:25:00.040 --> 0:25:04.639 Other he was always my encouraging person, like he was 0:25:04.720 --> 0:25:08.760 my constant safe place. Carlos lived with me, and I 0:25:08.800 --> 0:25:12.920 couldn't hide what was going on like he saw it all. 0:25:12.960 --> 0:25:16.200 He saw me throwing products on my HS that would 0:25:16.200 --> 0:25:19.320 make me scream like you know, he saw it all 0:25:19.359 --> 0:25:28.600 and he loved me through it all. After Carlos is passing, 0:25:29.200 --> 0:25:32.960 the HS community became more important than ever as Diena 0:25:33.000 --> 0:25:36.040 found herself channeling her grief into a new sense of purpose, 0:25:36.400 --> 0:25:39.679 propelled by her husband's memory. He was actually at the 0:25:39.720 --> 0:25:42.840 first speech that I ever did in New York. He 0:25:43.000 --> 0:25:45.640 was really supportive. As I started to travel as an advocate, 0:25:46.280 --> 0:25:48.719 we found out that kind of by accident, that I'm 0:25:48.760 --> 0:25:52.639 a really good public speaker, and so I started writing 0:25:52.640 --> 0:25:54.960 speeches and giving speeches that they would ask me to 0:25:55.040 --> 0:25:57.239 go to these conferences and I would start speaking, and 0:25:57.280 --> 0:26:02.600 he was always such a champion of mine. Dr Kirby 0:26:02.760 --> 0:26:06.760 is another of Athena's champions. In front of hundreds of doctors. 0:26:07.400 --> 0:26:11.919 Athenis shows up, she talks through her story. She is 0:26:11.960 --> 0:26:16.760